PURPOSE: (1) To examine the structural validity of the French version of the Child and Adolescent Scale of Participation (CASP-Fr) in children with neuromuscular diseases (NMD). (2) To determine the influence of demographic and clinical factors on the participation of children with NMD. MATERIALS AND METHODS: We conducted an observational, cross-sectional, multicentre study in 3 centres in France. The CASP-Fr was completed by parents of children with NMD (age 3-18 years). Exploratory Factor Analysis (EFA) was performed to evaluate the structural validity. Total CASP-Fr score was used to evaluate participation and the effect of relevant clinical factors on participation was determined using multivariate analysis. RESULTS: We included 138 children. Median (Q1-Q3) age: 10.6 (8.0-13.1 years); median CASP-Fr total score: 88.5 (81.3-94.1). CASP-Fr evaluated the self-care, communication, mobility and advanced activities constructs of participation. Only motor function was significantly associated with participation in the multivariate analysis. CONCLUSIONS: The CASP-Fr evaluates slightly different constructs in children with NMD than the original CASP. The participation of children with NMD was relatively high. The association with motor function suggests a major influence of the environment that should be further explored to improve the involvement in life situations of children with NMD.
Camille de Montferrand, Marie D. Morard, Laure Le Goff et al.
Measures of prosocial behavior can influence policy, legislation, investment, and inform assessments of the overall state of society. Evidence suggests that methods are important in determining these measures. To widen and deepen our understanding of the complex relationship between these items, we compared participation and volunteering data from a national birth cohort study (National Child Development Study [NCDS]) with data from a linked qualitative study, the Social Participation and Identity Study (SPIS). We evaluated the strengths and prosocial behavior content of each and explored possible links between their respective methodologies and participation and volunteering estimates. We found that prompts and probes were associated with higher estimates and narrow filter questions with lower estimates. The SPIS afforded detailed insights into lived experiences and personal narratives of volunteering and participating, whereas the NCDS supported analysis of these behaviors over time and from a lifecourse perspective. Implications for researchers and policy makers are considered.
This article explores participation as underlined in the new Norwegian Child Welfare Act on child welfare institutions (CWI). Future-oriented research on Child Welfare Services can provide important clues on how to practise what is in the young person’s best interest. The narrative thematic analysis is based on the stories of three young women aged 17–26 with different backgrounds and experiences from Norwegian CWIs. An analysis focusing on a possible, plausible and preferable future in CWIs offers a vision of how to develop more sustainable care. The narratives revealed challenges and possibilities connected to participation. By adopting a future-focused perspective in social work, we can explore the impact of the past on current practices and envision future possibilities based on present knowledge.
Mira Aurora Marlow, Rita Sørly, Heli Kyllikki Kaatrakoski
Abstract Child protection conferences are central to decision-making within child welfare systems. Following the expansion of online working during the pandemic, many English local authorities have adopted hybrid conferences, combining in-person and online participation. However, little is known about how these arrangements shape participation and decision-making. This article reports first-stage findings from a national study of hybrid conferences. It examines how they are organized and practitioners’ views on their implications for participation and multi-agency deliberation. Data derive from nine regional workshops with children’s social care professionals (n = 301) and an associated questionnaire (n = 375), with responses received from 95 percent of English local authorities. The analysis identifies a six-type typology of conference configurations currently in use, spanning a continuum from fully in-person to fully online formats. In addition to mapping national practice, this article makes a conceptual contribution to understanding professional judgement in child protection by showing how different conference configurations create distinct relational conditions that shape interaction and decision-making. While hybrid conferences may widen access and improve attendance, some, particularly those where parents attend online, introduce relational risks that may influence decision-making dynamics. Hybrid conferences should therefore be treated as adaptable tools requiring explicit consideration of their relational and decision-making effects.
In the Portuguese judicial system, the justice spaces were designed by adults and structured for adults, and they embrace both relational dimension and power exercise –privacy is publicized, competencies are monitored, and weaknesses are scrutinized. Research, implemented thru a multiple case study, aimed to assessment children’s participation rights exercise in those same spaces. It is confirmed that childhood and children’s conceptualizations have repercussions on praxis, since there is an image that associates them with lack of capacity, mirrored in and by their minority. Therefore, perpetuating children and childhood's exclusion moments, witnessing prejudice reproduction and an endemic culture of non-participation. Thus, child's contemporaneity must be valued, both for its presence in the breadth of human life and for the valid, and valuable contribution it makes to the composition of its living worlds.
Introduction: Participation is an important dimension of healthy child development and is associated with higher self-rated health, educational attainment and civic engagement. Many children with special healthcare needs (SHCN) experience limited participation and are thus at risk for adverse health and developmental outcomes. Despite this, interventions that promote participation in healthcare are scarce. We therefore evaluate the effectiveness of a complex age- and condition-generic intervention that strengthens participation-centred care involving parents and their children with SHCN by, inter alia, assessing preferences, specifying participation goals and facilitating shared decision-making in care. Methods and analysis: In this study protocol we describe the design and procedures for an unblinded, stepped wedge, cluster randomised trial conducted in 15 German interdisciplinary healthcare facilities providing services for children aged 0–18 years with SHCN. Sites are randomised to five periods in which they switch from control to intervention condition in blocks of three. The intervention includes: (1) team training focused on participation-centred care, (2) introduction of a new software facilitating participation-focused documentation and (3) implementation support promoting the transfer of training content into routine care. Study sites deliver routine care while in the control condition. As primary outcome, the degree of perceived shared decision-making with parents (CollaboRATEpediatric parent scale), a potential antecedent of achieving participation goals in everyday life, is assessed on one randomly selected day per week during the entire study period, directly following care appointments. We aim to sample 70 parents per study site and period. Additionally, participation of children is assessed within a closed embedded cohort with three parent and patient surveys. Intervention effectiveness will be modelled with a marginal model for correlated binary outcomes using generalised estimation equations and complete cases. A comprehensive mixed-methods process evaluation complements the effectiveness analyses.
Michael Eichinger, Tatiana Görig, Sabine Georg et al.
BACKGROUND: Many countries around the world lack data on the epidemiology of agency response to child maltreatment. They therefore lack information on how many children in need get help and protection or if children stand equal chances across regions to get services. However, it has proven difficult to commit child protection agencies to participation in incidence studies. METHODS: The Optimus Study invested in a continuous collaborative effort between research and practice to develop a data collection for the first national study on the incidence of agency responses to all forms of child maltreatment in Switzerland. An innovative approach of utilizing individual agencies' standardized data reduced work burden for participation respectably: any arbitrary excerpt of data on new cases between September 1 and November 30, 2016, could be uploaded to a secured web-based data integration platform. It was then mapped automatically to fit the study's definitions and operationalizations. RESULTS: This strategy has led to a largely successful participation rate of 76% of agencies in the nationwide sample. 253 agencies from the social and health sector, public child protection, and the penal sector have provided data. CONCLUSIONS: Valuing agencies context-specific knowledge and expertise instead of viewing them as mere providers of data is a precondition for representativeness of incidence data on agency responses to child maltreatment. Potential investigators of future similar studies might benefit from the lessons learned of the presented project.
Andreas Jud, Céline Kosirnik, Tanja Mitrović et al.
The family environment in Romania is one of the most abusive for children, 87.7% of reported cases of abuse are in the family.Moreover, the main methods of discipline used by parents are raising their voices, threats and physical punishment.In order to respond to such problems, HoltIS Association with the support of the UNICEF Representative in Romania developed a parenting education programme to support the development of skills for parents from the vulnerable and disadvantaged categories.(1) Background: The present study aims to investigate how parents' participation in parenting education courses contributes to changing parents' behaviour towards children and reducing child abuse.(2) Methods: The study is a qualitative one, using the focus group and individual interview for data collection.From the 85 schools where such parenting programmes were organized, 6 schools were selected, whose parents, parent educators and representatives participated in the focus groups and individual interviews; (3) Results: Parents' participation in parenting education courses contributes to developing self-control, to change the behaviours into positive ones towards their own children, to spending quality time with their own children; at the same time, parents' participation has positive effects in terms of reducing school dropout, improving children's school results, reducing absenteeism and changing children's behaviour towards school and towards their peers.In addition, the organization of parenting courses by trained teaching staff has beneficial effects on school culture; (4) Conclusions: Parenting programmes are one of the most effective forms of preventing child abuse, the family being the most abusive environment for children.The data collected from parents and teaching staff emphasize the transformations of behaviour at the level of all three actors: child, parent and teachers, with effects on the reduction of child abuse.
BACKGROUND: There is a need for an instrument to measure participation and independence in children with disabilities. FUNDES-Child-SE has its origin in the participation questionnaire Child and Adolescent Scale of Participation. AIMS: Test the psychometric properties of internal consistency and test-retest reliability. MATERIAL AND METHODS: This cross-sectional study included caregivers of 163 children with disability aged 6-18 years, 59 of whom were also included in the test-retest study. Descriptive statistics were used to evaluate the proportions of valid ratings. Internal consistency and test-retest reliability were tested through Cronbach's alpha and the intra-class correlation coefficient. RESULTS: The amount of not relevant/not applicable ratings was substantial but varied between items and subdomains. Internal consistency was acceptable (0.8-0.95), and the test-retest was marginal to excellent (0.73-0.95). CONCLUSIONS: The reliability together with the content validity support the use of the FUNDES-Child-SE to measure participation and independence in children with disabilities. However, results should be interpreted with caution due to the small sample size and possible selection bias. Modifications to reduce the not relevant/not applicable responses should be investigated together with the instrument's responsiveness. SIGNIFICANCE: FUNDES-Child-SE can be used to facilitate a discussion of participation and independence and to plan interventions in a habilitation setting.
Jennifer Gothilander, Anna Ullenhag, Henrik Danielsson et al.
BACKGROUND: FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity. METHODS: Caregivers of 163 children with disabilities aged 6-18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components. RESULTS: The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data. CONCLUSIONS: Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.
Jennifer Gothilander, Anna Karin Axelsson, Henrik Danielsson et al.
